"You are your child's best advocate."
That's what everyone keeps telling me. If ONLY it was as simple as that phrase makes it sound.
In the last few days I have learned just how absolutely difficult that is. In the past week, I have emailed my son's pediatrician 7 times regarding this matter and 5 times regarding other health concerns. If you wonder if we drive him crazy, the answer is yes, although he's never told us that.
I have also called the in-state Neurologist's office twice, but talked to them on the phone 4 times. I have talked to the out of state Epileptologist's office 3 times. Called our county social services twice, the human services center twice, and the Insurance company 3 times.
I've emailed 5 local legislatures, 2 Senators and a State Representative. Two of them have contacted me back, one by phone and one by email. I've talked to one local insurance business owner, who has a son with special medical needs, 2 other advocates referred to me by parents of other kids who have epilepsy, and about 6 other parents of kids with epilepsy. I've signed my son up for the local epilepsy foundation, emailed back and forth 3 times with a representative from there and she is calling me this afternoon. Also the human service center lady and insurance are supposed to be calling me back this afternoon. There are still 2 other people that have been recommended to me that I am waiting to contact until the rest of these people call me this afternoon.
You know who HASN'T talked to me, the doctors who put us in this position in the first place. The medical doctor that consults for our insurance and denied my son's out-of-state claim. The doctors who sent us packing last February and refused to see my son in April stating they don't know how to help him and there's nothing they can do. It is those in-state doctors who made us fight for 6 months to get my son seen out-of-state at an Epilepsy specialist the first time, after they refused to see him. However, the out-of-state doctor needs more tests to help my son and the insurance doctor refuses to let us be seen there again. Insurance states my son could have these tests done in state, coordinated by the very same doctors who have previously admitted they can't help him. When I ask the insurance company what I can do to prove my son needs to be seen out of state, they tell me to have our in-state specialists write a reconsideration letter. Meanwhile the in-state doctors inform us they cannot send a letter of reconsideration to the insurance because the insurance doctor already told them no matter what they send, he's still going to deny my son services.
So here we are, after fighting 6 months to be seen out of state for a 2nd opinion, unable to follow through with that 2nd opinion because the insurance will not approve the testing my son needs to have done in order for that doctor to decide anything. We're stuck with the same doctors who I rightfully don't trust after telling us they don't know what to do for my son, refuse to see us, and hardly communicate with us . Meanwhile my son continues to develop new problems and have old problems treated within the limits of his pediatrician's ability because insurance doesn't want us to go anywhere else. His pediatrician is wonderful, AMAZING, honestly the only one on our side right now, but he's also reached the limits of his abilities. My son is falling frequently, having behavioral problems, experiencing memory loss, and again not consistently sleeping well through the night, plus a whole list of other things. Although all kids can do these things, these are red flags for him and for many other kids with epilepsy.
I'm exhausted, physically and mentally. My other son has also been sick this week with typical childhood "junk" so is also not sleeping well, demanding more attention and was running fevers and required his own doctor visit. I'm still on the phone also scheduling evaluations for my son, and brought him to an appointment last Friday, one appointment this week and 3 appointments next week. His brother also has 2 appointments next week. I myself had 2 this past week for other unrelated problems. I also worked 16 hours and besides missing 1.5 days of class to take care of these things, attended doctoral school all week, completed homework and had an exam today for which I was up all night studying.
So you see, Mr. Insurance doctor who's never met my son, you have left me at no other option but to exhaust myself and continue to fight trying to fix the fact that you don't take the time to find out the whole story behind my son's request. The request it seems you had decided was going to be denied prior to us even asking for approval. I will NOT take my son to doctors who have made it clear to me they can't help my son. I will NOT take him to doctors who should have been able to come up with this list of tests on their own, but sent us packing because they didn't. I will NOT settle for second best for my son because I AM his best and biggest advocate. The price I pay for that is steep, but the reward for that is a living, healthy and happy child, and you will NOT take that away from me.